My Story 
In early November 2023 I was experiencing a very annoying pain in my right shoulder blade, like a charlie-horse. By early December the pain was getting worse and I went to my family doctor who thought that since I owned a farm and heated my house with wood that I had strained myself. I accepted his diagnosis and took his recommendation to take Tylenol and Naproxin for the pain. By Christmas time it was getting worse. In early January, I went to the local chiropractor who gave me an adjustment and agreed with my family doctor’s diagnosis. My family doctor encouraged me to continue with the pain meds and be patient. He did send me for x-rays which did not show anything.
On January 21, 2024, I started to get wobbly in the legs and that night after getting out of the shower, I felt my belly bloat. January 22, I spent most of the day in pain. On the morning of January 23, I tried to get out of bed to let my dog outside and my legs gave out from under me. My two children came to my rescue and literally dragged me to the car, to the hospital.
I was quickly seen at the hospital and sent for a CTscan which revealed that I had a large tumor on my spine that was blocking the spinal fluid. I was put in an ambulance and sent to KGH for emergency surgery where I underwent a spinal laminectomy with decompression to my T4-T8. I woke up in recovery, paralysed from my breast bone to my feet. It felt as if an elastic band was compressing my chest and everything below that was numb and tingling. After recovery, I was sent to ICU for a day. According to the doctors, the damage to my spine occurred before the surgery, which was when my legs went out from under me due to the spinal fluid in my spine being blocked by the tumor. I was now an incomplete paraplegic living life in a wheelchair. I kept asking if this was permanent and all I got were blank stares and comments like "don't get your hopes up," "it may take years of therapy before you will be able to walk," "if you do walk again, it may only be a very short distance." I was not going to be defeated—I was determined that I would walk again, no matter how long it would take.
Once in a regular hospital bed, an oncologist/hemotologist doctor came to visit me. She wanted to do a bone marrow biopsy to confirm the type of cancer I had. Her tests along with the results of the tumor biopsy confirmed that I had Multiple Myeloma which is a terminal/fatal cancer diagnosis. Up until this point in time, I was taking everything in stride. This was the first time that it really hit me. I had cancer! A fatal cancer! This is serious!
I was also told that the surgery was only able to remove about 80% of the tumor and that I would need radiation treatments to eradicate the rest of the tumor. The treatment for Multiple Myeloma was the standard RVD treatment which consisted of a daily pill of Lenalidomide and a weekly needle of Bortezomib followed by a number of Dexamethasone pills. After two cycles of RVD, I was given five radiation treatments, followed by another four cycles of RVD.
By mid-April, I was doing very well with my treatments and was also progressing with the neurological damage to my body. The pin-prick tests were showing that the numbness in my toes, feet and legs was subsiding. I was given a wheelchair and I spent many hours in the hospital roaming the hallways building up my upper body. I set my attitude and goal that I was not going to let this cancer get the best of me.
The doctors recognized my desire to exercise and overcome my neuropathy, so after my radiation treatments I was admitted to the Providence Health Care facility in Kingston, Ontario into their spinal cord rehabilitation program for a five week period. This was probably the most inspiring and helpful experience. At Providence I had my own private room, exceptional meals, therapy sessions twice daily along with three mornings a week in the salt water therapy pool. Over the course of my stay I advanced from needing help to get out of bed and go to the toilet, showering and getting in and out of my wheelchair to being able to all those things completely independently on my own. My upper body strength was exceptional. I had not felt this good in years. Prior to my discharge from Providence, I was also doing what is referred to as non-functional walking exercises which gave me hope that I would walk one day. See my tribute to Providence.
Numerous MRI’s and bloodwork over the past few months indicate (by doctors assumptions) that my cancer is aggressive. There are lesions on my spine at the T10-11 areas and one small lesion on my brain. All of which they are telling me are nothing to worry about at this time.
After Providence, I spent one month at home where my daughter and my son helped me to continue the exercises I had learned while at Providence. I was doing so well and then came my stem cell transplant program.
Stage 1: Stem cell collection involved 5 injections of a drug called “Grastofil” once a day over a three day period to stimulate the production of white blood cells and reduce the duration of neutropenia. After the stem cell collection, I spent another month at home before being admitted back into the hospital for the actual stem cell replacement.
Stage 2: July 9, 2024 I was admitted to KGH for stem cell replacement treatment. On July 10, I received several more injections of "Grastofil" and then a high dose of “Melphalan,” a chemotherapy drug used to treat multiple myeloma and blood cancers. It is administered prior to stem cell replacement to condition the body (patient/me) to receive the stem cells. The effects of this drug were devastating to say the least. The nausea, vomiting, diarrhea, inflamed bowels, increased neuropathy, fatigue and total hair loss spanned the entire month of July. I lost all body strength and I was set back to where I was after surgery, using a bedpan, confined to my bed with minimal use of my wheelchair.
The overall goal of Melphalan was to take out my immune system, reducing my neutrophils, white blood and red blood cells and a number of other key elements so that the stem cells could re-establish themselves and create a new immune system.
On July 15, I refused to take any more oral medications and I could no longer eat without vomiting. Doctors put me on IV fluids and all medications were administered through IV. This was actually a good decision from my perspective as it gave my gut, bowels and bladder a chance to heal. I remained on IV fluids and meds until two days before discharge on July 31, 2024. At the time of discharge my neutrophils, white and red blood cell counts were all still below normal.
And now my cancer and spinal cord injury journey continues…
"Realize that everything connects to everything else.” – Leonardo DaVinci
